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Friday, July 31, 2015

The Last Week of Summer

The last week of our summer schedule has been pretty restful and low key. Amber had a POTS / EDS crash after a short trip on Saturday, so we spent the following days supporting her body through recovery. She says it was worth it, though, to visit my sister's family for our nephew's 8th birthday and watch one game of his baseball tournament.

The heat indices have been well over 100 degrees with actual temperatures in the upper 90's. We did all we could to help Amber watch the single one hour game out in the heat and humidity, but she crashed anyway. It was still exciting for the kids.

(left) Our July Amber and Mom day out. Then (right) the very next day at her cousin's baseball game. This was shortly after arriving and she was already wearing a cooling belt. We switched the cooling vest later. Finally, we have a cat that sleeps in this position ALL the time. "Put your belly in the air, like you just don't care."

Being stuck inside due to heat and illness provided plenty of time for Amber to make headway in a couple of subjects. She's plowing through the remainder of Algebra 1 and still enjoying Life of Fred. She also finished all the preparatory lessons prior to reading the first literature book and then started Pudd'nhead Wilson by Mark Twain.

There's also been hours of online educational game playing. We're reviewing a couple of games from Dig-It Games that have been a great summer addition / addiction.

Sunday with poor circulation - compression socks and gloves. With medication, increased fluids, and rest she was much better on Monday at her after dentist lunch.

Amber's GI doctor is back in town and contacted us with her biopsy results. They were all "normal", which doesn't explain the worsening dysphasia. The doctor wants an x-ray and to see Amber next Thursday. It really is a never-ending cycle. Thankfully, Amber's regular dental checkup this week went perfectly. No issues, none. Zero. Teeth look great and are still where the orthodontist put them - Amber's dentist is her orthodontist's wife. It's very convenient.

We're pretty excited about the upcoming school year starting on Monday, which incidentally is also Fred's and my 19th wedding anniversary. We're almost old. At any rate, we have plans for all of our little school rituals while Fred is at work during the day. I'm not sure how many actual lessons will be completed, but we'll get the first day traditions out of the way.

My goofy girl, pretending the couch is still there, and now the new furniture. And more educational game playing.

This morning Amber and I took my mom to visit my dad's grave on the third anniversary of his death. It doesn't seem like it could hardly be three years; I can remember his last day clearly still and maybe I always will. I have very conflicting memories of that summer. Fred had been gravely ill, but pulled through and was well into his recovery when my dad entered the hospital for his final stay. I felt such relief to have Fred home and healing while at the same time my dad's life was seeping away.

This week we've been researching exercises for Ehlers Danlos Syndrome and the best ways to support Amber until the genetics appointment, which could be as far out as June of 2016 if they don't get down to Amber on the wait list before then. I feel lost and would go back to rheumatology for guidance, except for the fact they basically told us they know she needs specialized therapy but don't know what to order or what PT groups specialize in EDS. I need them to have that information.

More hypermobile fun. We've started calling her Barbie, because her shoulders rotate forward and backwards like a Barbie doll. These are honestly not great pictures because she was having a bad day and all her joints hurt, so this isn't nearly as flexible as she normally is.

We did get approval for Amber and me to take the water aerobics class at the gym, even though Amber is a few years too young for the listed minimum age of 16. This class only meets twice a week for four weeks, but we can re-register for the class every four weeks if it works out. Amber is supposed to have cardio exercise seven days a week to help with the POTS. We are struggling with this schedule greatly since every Mayo approved exercise hurts, and so they are now not acceptable exercises.

I also realized this week what an unobservant parent I have been over the years. How did I not know my child was this hypermobile? Even if it's getting worse, how did I not know? How did I not know that bowling, which has been taken off of her fun activity list, was causing so much pain? She actually felt her shoulder sublux while bowling earlier this summer and didn't tell me. She just managed to get things put back into place. How did I not know her ribs sublux regularly and she moves them back? I know she could be more vocal, but seriously do I not know what pain looks like or does she just mask it well? It's been one of those weeks.

This weekend instead of resting before our new school year, Amber and I are reorganizing, and turning her playroom into something different. We're not sure what it will be yet. We had new family room furniture arrive on Thursday and Amber requested the old couch for her playroom to make it more a teen hangout room. We'll see how this goes and if we can find enough space for it. There are many, many toys and younger Amber beloved gadgets in there still, not to mention physically moving a full size couch up the stairs.

I'm sorry the crash happened after Amber's time with her cousin, but she seems to have great attitude bout it, as usual! Please do not be so hard on yourself! You are the most attentive, accommodating, and vigilant mother I know! You are doing a phenomenal job caring for Amber's needs.